HELP! BAD LAB RESULTS WITH NDT

HELP! BAD LAB RESULTS WITH NDT

I switched to 1/2 grain Armour Thyroid on August 9 and then on September 14 switched to 1/2 Nature-throid (because I read It is better).

Today September 30 I got my lab results and they are extremely bad, no wonder I have been feeling so weak and exhausted lately. Nothing can make me get out of bed. Please see image above. (Note: I didn't take NDT on the day of the test, will this have an effect since NDT doesn't stay on the bloodstream for too long? Or does it? I was just following the lab's indications.)

Before NDT, my usual dosage of synthetic levothyroxine was 125mcg and my usual TSH 4. I went down to 0.1 tsh once, when I took a combo of 100 levo + 12.5 cytomel but the anxiety and panic attacks were unbearable plus had heart palpitations.

Question is, why is my TSH so high (80) if I'm taking NDT. Im aware it's not a full dose, just a transition one but first time I got diagnosed I was on 40 of TSH and that was without any treatment. So why isn't the NDT working for me?

What would you recommend? Should I alternate 125 levo one day, 1grain ndt the other?, should I take 125 levo and 1/2grain ndt everyday? what would be safer and most effective taking in consideration my heart? I don't know what to do!

I would much hugely greatly appreciate your advice. Thank you.

Last edited by

29 Replies

oldestnewest
  • You're only taking the equivalent of 50mcg levo when what you need is closer to 125. I'd advise you to raise the dose to a grain for a week or two and then to 1.5 etc until you feel better.

    We can speak in terms of meds having equivalents but from what I hear anecdotally you may need to be on a little more ndt than what is thought to be the equivalent of levo dose you would have needed.

    Here's a chart to help you with converting one type of meds to another: centraldrugsrx.com/pdf/Thyr...

    Tsh fluctuates all the time and depends on autoimmune activity, time of day and allsorts, which may account for why your tsh was 40 on no meds and is in the 80s on meds. There is no real rhyme or reason to it.

  • it took me months nearly a year to get my dose right, 4 grains and 50 mcg, but it years since this with good health and no migraines which were my cause for changing its a hard jouney I hope you feel better soon k x

  • Clearly your under medicated! And this is reflected in the dose of ndt you are taking. It is not an equivalent so your tsh rises & thyroid hormones have plummeted....it was to be expected to be honest. Youve been on a far too low a dose for nearly two months, on top of which you might be getting a better uptake of horomes into your system on the nature throid.

    No wonder you feel so rubbish!

    Everything points to increasing the ndt dose -no need to make it complicated by throwing in alternating between levo and ndt. Just increase your dose! Looking at the chart you need to be on around 3 grains maybe a little more so you are going to need several increases to get to the equivalent. When I switched across I didnt start again but I did start on a lower equivalent dose incase my body processed the ndt differently to the levo. In your shoes I would start increasing it on shorter periods of time until you reach three grains then stick to the 6-8 week intervals before increasing. Am not a medic but thats what I did.

  • I was on 125mcg Levo. I'm on 3 grains of NDT to get reasonable T4 and T3 levels (mid range)! You need much more NDT than you are taking!

  • You need to increase the NDT , it took me 12 months to sort my dosage out right. Good luck 😊

  • You are on a tiny dose! Your dose is way too low. You START on half a grain and then raise every two weeks or so by half or quarter grain increases until symptoms are gone and labs are good.

    Don't panic, you just need to increase.

  • It's just that you have had blood tests too early. Have a look at stop the thyroid madness book or website about increasing dose too.

    It's how you feel not what your blood tests say.

    Sue

  • Your dose is too small. It took me 4 months to sort out my NDT dosage. I started with 1 grain and increased in half grains every 14 days. I was on 125mg Levo and feeling bad. I got to 3 grains per day in two doses one in the morning and another in the afternoon. I was feeling hot and losing to much weight so I decreased to now 2 grains per day. I weigh 140lbs

    This is perfect for me, don't worry to much about your lab results its how you feel. It takes time and patience but it should work for you too. Good Luck.

  • I have never seen a TSH that high. Mine was 13 and I was in bed.

    2 Questions.

    1. Where did you get it, could it be fake?

    2. 1/2 a grain is a tiddly amount. I take 4 times as much and I know people on 6 times as much, so why are you on such a tiny dose.?

  • Hi, I got it from the online <source> that ships worlwide. I guess it could be but it seems pretty legit, many others in here order from them. For now it is my only option too because I live in Peru where there's no way to obtain NDT whatsoever.

    And I'm on this tiny dose because I am transitioning from levo, I was aiming for 1 1/2 grains. I thought it had to be done slowly so my heart doesn't collapse or something. However I'm discouraged because I wasn't expecting my TSH to get soo high, it was almost making me believe Nature-throid was no good for me. I will not wait so long for an increase now, though.

    [ Edited by admin to remove reference(s) to specific online source(s).

    Please read this:

    healthunlocked.com/thyroidu...

    Please read and abide by the forum guidelines which are available here:

    thyroiduk.org.uk/tuk/suppor...

    I would much rather not have to edit your posts because you have not followed the guidelines. ]

  • Mirthangelica -please can you remove the name of the pharmacy -we are not allowed to name to protect them. Thanks. 😊

  • Nature throid is fine as is the pharmacy (incidentally I agree with other poster take their name off - us patients have precious few choices as it is without causing problems for them). Just increase the dose - half a grain morning and half a grain evening.

    And if you haven't fully researched NDT before starting - this is what happens. This is why doctors don't like it and won't prescribe it as uninformed patients get in a mess and make it harder for the rest of us. It is irresponsible to buy drugs online without having a clue what you are doing. Sorry to be direct but here in the UK thyroid treatment is APPALLING and doctors are looking for any reason to prevent patients getting NDT. When we self medicate we are not only responsible for our own health but we need to be careful not to let the team down also. Running around with your hair on fire won't help you or us.

    You need to go to STTM and read how to do it properly.

    You need blood tests after 6 weeks on a stable dose. At around two or three grains depending on symptoms.

    You just need to increase your meds.

  • If I were you I'd start taking 120mg of NDT a day now, one tablet in morning & one in evening. I take that amount (I was on 100mg levo before)

  • Thank you all! I really appreciate your advice. And yes, I'm aware the dose is pretty low, but what confuses me is that even with a low dose of NDT I'm getting worse TSH results than when I wasn't taking any treatment at all 9 years ago. With these results I'm afraid I'll have to increase my dose drastically to a whole grain and that scares me because I don't want to have a heart attack. But at the same time having the TSH so high so long might be causing irreversible damage to my organs. So I was thinking of mixing LEVO and NDT, like 75mcg levo and 1/2 grain NDT starting tomorrow. What do you think? Have you ever tried mixing them? How did it go for you?

  • Do you have a weak heart? Have you previously had a heart attack? If your heart is basically healthy then adding 1/2 grain of NDT is not going to cause any dramatic problems. Your heart may speed up a little bit a couple of hours after taking a dose of NDT but it will slow down again.

    Imagine you were well enough to go for a run. Your heart might get up to 160 during the run, but it would slow down again. It wouldn't kill you.

    Doctors have done a good job on persuading patients that thyroid meds are really, really dangerous - like taking dynamite! But they aren't. Overdose would be unpleasant, so nobody would voluntarily take too much for very long.

    If you have previously coped with 125mcg Levo then I think you are perfectly safe to go up to 1 grain a day. Many people split dose, so if you are nervous take 1/2 grain in the morning and 1/2 grain later in the day. Some people dose every 12 hours, others dose according to their activity levels.

  • Mirthangelica,

    I would definitely not recommend mixing Levothyroxine and NDT, especially not adding in such a high dose all at once. Just increase your NDT slowly and calmly.

    This TSH result is high, but it's not enormous. I have had results over 100 many times. So don't panic!

  • A whole grain isn't dramatic its 38 mcg of T4 and 9 of T3. You are more likely to have a heart attack when you are this hypo!

    Don't mix levo just increase your dose!!!!!

    And get informed asap. This kind of misinformation is not helpful - nor is transitioning to a new drug when you seem to know nothing about it.

    If we are self medicating then we MUST know what we are doing BEFORE we start.

    Educate yourself asap.

  • you won't have a heart atrack and what happened 9 years ago has nothing to do with how your body reacts today. Listen to these people who know what they are talking about and stop making yourself iller than you already are. you are supposed to introduce ndt slowely, so dropping a bit of levo and replacing it with ndt, over a number of weeks,mthen increasing your ndt until you feel you are on an even keel. Unless I am mistaken, you have just stopped the levo dead and then not replaced it with an equivalent dose of ndt so your body is reacting to that, not the ndt. Sorry to sound so blunt and I understand why you are scared but listen to those who know because they have been through it :-) good luck

  • Hi I would say the reason your results are worse is because the 9 years you have been on levo your thyroid as been switched off by your levo and you have been running on the medication. Now that you have changed to such a low dose of NDT your thyroid hasnt kicked back in yet to try to help out. Your body is running on the low dose of NDT only and this is the reason you feel so bad and results are so low and tsh so high as your pitruitry, sorry spelling off, gland is screaming at your thyroid to wake up. Best to check your ferritin levels as well as b2, b12 as I discovered that it was the reason for my bad reaction to NDT when I tried to up my dose could be why you reacted badly to levo/t3 combo if your ferritin low your body cant handle it very well and it feels scary. If the doc checks it dont believe them when they tell u its normal ask to see the numbers. My ferritin was 46 my b12 was 512 they told me I was fine but it was too low for normal thyroid function. Hope this helps to explain why you feel like you do its less scary when you know why. Good luck xx

  • everyone's set point for these things is different but having said that you have dropped your T4 medication massively and your body is shocked into very high TSH, possibly.....

    I cannot tolerate Levothyroxine but take a small amount, 25 micrograms, with 1 grain of desiccated. that is 38 µg T4 and 9 µg T3 from the desiccated and 25 µg from the Levo'.

    From your blood test and what you say you need more T3, as much as you can take without hyper symptoms e. g. a full grain which will give you 9 T3 and 38 T4, still not enough T4 but that is the problem with desiccated. I suspect the extra T3 would help very Quickly.

    Of course you should beware the manufacturers advice for taking the meds and anything else in your own medical status, but I can say that the above works for me, well better than Levothyroxine alone - some of us can't tolerate it and / or process T4 well enough.

  • Sounds like a plan.

    I always advise people to drop their current doeses of T4 by 50 mg per 1/2 a grain increase every 10 days or so, depending on your reaction to T3. I am lucky as i can increase 1/2 a grain every 10 days without a problem, 14 days if it makes you a little edgy per increase rather than stopping T4 altogether and starting NDT, as you always become more hypothyroid at this time if you do this method.

    I am on 2 grains (and then retested) and my TSH is low (which doesn't matter on NDT), T4 is still low and T3 is just a fraction below mid range but feel so much better. T3 is the most important indicator on NDT as I am converting T4 to T3 quite well.

    FWIW I will increase to 2 1/2 and then maybe to 3 grains depending on how i feel and then get retested.

  • Well, you are obviously very undermedicated. You went from 125 levo to the equivalent of about 50 levo, so it's not surprising.

  • If you go out on the web and look up the amount of T3 and T4 per grain of NDT, I think it will be clear that your dosage is too low. For instance, 1/2 grain Armour is equivalent to T4=19mcg plus T3=4.5mcg. Also, there are a small number of patients who are on NDT, who have to take a little extra T4 or T3 because the T3:T4 ratio of 1:4 in NDT, is not optimum for them.

  • I would forget about synthetic thyroid medication. If you were on 125mcg of synthetic, you need at least one grain, if not more, of NDT. That is the starter dose for NDT. Look at: stopthethyroidmadness.com regarding how to increase. You are on only on half of the amount that you need/half of the starter dose. Why? Did a doctor put you only only half of what you need? You need more. My endo says to take my needs at least one hour before testing in the morning. Good luck!

  • Why that only increases your T3 levels and decerases your TSH? You should not take any NDT at least 24 hours before your test.

  • Just wanted to add that I too consider that your NDT dose is way too low. I used to be on 125 Levo and my NDT dose was calculated to be 1.25 grains NDT. This was too low and I increased it to 1.5 grains, even this is a bit low.

    The second point about adding Levo to your NDT, IMHO I suggest a resounding NO! Get your primary problem cured as far as "as well as possible" first, then fiddle with other factors. If you have two moving targets it will be years before you sort it all out. For what it matters, it took me a year to get on the best possible dose I've ever been on - and I still not consider my health perfect.

  • The best conversion factor I have found puts ndt at 1 GR. = 67.7 Levo, that would put you at 1.8, so don't be surprised if you end up around 1 3/4 GR. . I have felt better on ndt, but give it time and check your pulse rate, and unless you have previous heart problems, you shouldn't worry, you just might have the jitters.

  • Hi, hopefully someone here can advise me!

    I came off my Eltroxin 7 days ago and have been on Nutri Adrenal Extra 1 tablet per day for the last 3 days. I'm feeling anxious, irritable, nervous, serious forgetfulness which is awful....so I took my usual 100mg of Eltroxin an hour ago. Not sure if I should just stop taking everything for 2 days and start back on my usual dose of 100mg Eltroxin. Any advice welcome!

  • Hi,

    Sorry to hear that you're feeling badly.

    In effect, by not taking Eltroxin, you're lowering your overall blood levels of thyroid hormone (T4) and by taking Nutri Adrenal Extra instead, you're increasing the amount of cortisol and epinephrine in your system. Cortisol has an inhibitory effect on the thyroid gland ( further decreasing thyroid function), so I would expect that you might feel forgetful. Epinephrine can cause most of the other symptoms as it's the "fight or flight" neurotransmitter.

    The only reason to take Nutri Adrenal Extra is if you've taken the adrenal saliva test and it shows that you're low in cortisol. Nutri Adrenal Extra contains mostly vitamins & minerals but also has adrenal and pituitary glandular material, which are the "active ingredients" in that compound.

    You'll probably feel better by staying on the Eltroxin if you can't obtain desiccated thyroid (NDT) and confirm that you have adrenal issues before continuing with the Nutri Adrenal Extra.

    Just out of curiosity, what were the values of your last blood tests?

    TSH:

    Free T3:

    Free T4:

    Reverse T3:

You may also like...